Tuesday 'Tips'

[DonnaBoll]

Who is dealing with brain fog? What are you experiencing? How are you dealing with it?

[DebatDG9]

instead of having 101 things going on in my head like planning meals, working out shopping list, rehearsing phone calls etc I try really hard to just focus on the thing I’m currently involved doing - mindfulness. Also it sometimes helps if I say out loud what it is that I’m trying to do

[DonnaBoll Administrator in reply to DebatDG9]

Thank you for your wonderful reply! Mindfulness can often help a great deal in so many aspects of our lives. You are right about trying to limit what all is going on in our minds at one time. Just try to be kind to yourself when you feel overwhelmed with all that you have in your head at once. Great suggestion about saying what you are wanting to do out loud... repeat as needed! 😊

[Cascade35]

The brain fog can be so demoralising and frustrating. I’m forever having to write lists daily and cross things off as I do them. But when I’m mid sentence and I literally stop and can’t remember a word or lose the train of thought, it’s embarrassing

[exy21 in reply to Cascade35]

Me too

[DonnaBoll Administrator in reply to exy21]

Thanks for sharing that you experience it too. I have replied to 2 others who have experienced this too. I hope some of my suggestions can help. This is a real problem for so many with PBC - again a symptom no one can see but it surely is there.

[DonnaBoll Administrator in reply to Cascade35]

I can totally understand that feeling - especially in public. I make lists nearly everyday and use a lot of post it notes. I just mentioned to another member about the drug used here in the states called Lactulose often very effective for the brain fog. I read in Dr. Jones' book that often people thing they are early stages of dementia. Just so you know those with PBC have no greater tendency to dementia that non PBC people. Talk to your doctor about this. If you have a family history of dementia or Alzheimers you can be easily tested for this. The test is called the MoCA. You can google it. This brain fog can be very scary for many who experience it. It often affects their jobs as well. Thank you for sharing how it has affected you.

[Wocket in reply to Cascade35]

That’s just like me.

[DonnaBoll Administrator in reply to Wocket]

What have you found - if anything - to help you deal with it?

[Wocket in reply to DonnaBoll]

I haven’t found anything. I used to put it down to lack of B12 but I’m just as bad after having my injection.

[DonnaBoll Administrator in reply to Wocket]

Can you take to your doctor about maybe trying the Lactulose. I know how frustrating this is for you.

[Blue-Mom]

My mother had Alzheimer's and I am so afraid of that disease. My brain fog makes me so nervous because every time I forget a word or a date or a fact that I should know I wonder what is happening in my brain. I try to use tricks to remember but really the only thing that helps is to write things down. And the fog is obviously worse when tired. So hard.

[DonnaBoll Administrator in reply to Blue-Mom]

I can totally understand why you would have this fear. We all know it can run in families. Would it help if you took a test for cognition? There are tests to help detect early Alzheimers that you could take to your primary about. This might put your mind at ease. Here in the states, anyway, there is a drug called Lactulose that often is helpful for the 'brain fog'. Might be something to ask about as well. The test widely used to help test for early Alzheimers is callthe The Montreal Cognitive Assessment (MoCA) You can google it -

I use post it notes a lot!! 😊

[Blue-Mom]

Yes post it notes and at work I actually have created some files with step by step details for some important tasks that I have to accomplish. Gives me some peace that I am not messing things up. Seems silly but knowing I have instructions if I am having a bad day gives me peace.

I appreciate the info on the MoCA test. Not sure I want to do that though. haha Sometimes denial works too.

[DonnaBoll Administrator in reply to Blue-Mom]

you know what? sometimes denial can be ok..... what a great suggestion to others about putting that step by step file together for more involved tasks. Thanks so much for sharing that!